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Newly formed company will create a marketplace where individuals assert ownership of their personal data
Startup (and upstart) digital companies like to toss around catchphrases like “disruptive technology” and “disintermediation,” and maybe Hu-manity.co will become one. For now, the company is aggressively building out a fullscale, multinational platform, even before opening its doors for business. Backed by an anonymous angel investor, the company has just created an advisory board, featuring some well-known names in the digital world such as Ray Wang, MD, CEO of Constellation Research, and several executives from within pharma. Its CEO is Richie Etwaru, recently chief digital officer at IQVIA, and most recently involved in the launch of IQVIA’s Orchestrated Customer Engagement platform.
The premise of Hu-manity.co is simple, yet has profound operational and business implications: individuals—anywhere—own their personal data and will be able to assert that ownership on the Hu-manity.co digital platform. Then, any business entity that wants to make use of that data will buy or lease the data, and the purchase price will flow to the individual, less a Hu-manity.co processing fee. Personal health data is one of the first markets Hu-manity.co will pursue, although it has ambitions for arranging ownership of all personal data, such as consumer sales or online activity. Hu-manity.co asserts that ownership of personal data is an inherent right, but that until now there has been no legal mechanism to assert that ownership.
“Pharma companies use a variety of third-party organizations to acquire patient data, sometimes de-identified and sometimes not, and they use various opt-in strategies to connect directly with patients,” notes Etwaru. “But these generally give only a partial picture of the patient, have significant data-structure issues, and sometimes have questionable privacy limits. We have asked pharma companies what they would pay for clean patient data with full ownership rights, and the value can be as high as $1,000 per patient, per year.”
Another element of Hu-manity.co’s proposition is that individuals asserting ownership rights, and businesses bidding for data access, will connect on a blockchain-structured platform. Whether this is a bug or a feature remains to be seen.
Etwaru also notes that patient or healthcare data is already a multi-billion-dollar business; it’s just that the individuals whose data is being bought and sold have not been part of the transaction. Whether the many health-records organizations, prescription-sales data aggregators, financial credit bureaus and others will buy into the Hu-manity.co proposition is up in the air. It’s likely that while some of those organization will fight to retain ownership rights, Hu-manity.co will be on the side of personal-data privacy organizations fighting to limit third-party access.